Dear Prof. Thome
This letter is for the staff who came into contact with Ben in the 7 weeks he was in your unit. I apologise that this is written in English. I did so as I didn’t want anything lost in translation.
We want to say thank you in writing, especially as we didn’t get to say thank you to many of the staff members who helped us.
Our relationship with the ITS began when Dr. Pulzer showed me round the unit as I waited on the delivery suite for something to happen. I had never been on a special care unit before and although the whole thing felt like a tidal wave approaching, being taken around the unit helped settle me and I felt confident we were in the right place.
Then there was the attempted induced delivery and the eventual decision to do a caesarean. I felt defeated, having reluctantly delivered my planned caesarean section 3 years earlier due to breech positioning. But I also felt relieved – that something was going to help. Then, just as he was delivered, at 9:30 pm, Ben was whisked past us into the neighbouring room. I glimpsed the top of his head. I didn’t panic at first because Dr. Pulzer had already told me that if he needed a little extra help he would not come to me straight away. That was when Dr. Terliesner stepped in.
We could tell, shortly after Ben was taken into that room, that something wasn’t right, and I remember looking at Tom and saying, ‘Whatever happens, we’ll be okay’.
I was looking in the window of the room where Dr. Terliesner was standing, trying to gauge what was happening. After several minutes I caught Dr. Terliesner’s eye. If I had seen panic, or fear, I would have reacted in a very different way, but he gave me a small smile and somehow that helped me to believe he was in good hands. I will always think of Dr. Terliesner, as the person who saved Ben in those first few minutes of his life, and I will make sure Ben knows about him in time – his first hero!
Neither Tom nor I could meet Ben for the coming hours. Unbeknown to us, Prof. Thome, you were on your way to help, having, I think, already worked that day. I will always be sad that I wasn’t with Ben in those difficult first hours, but I also believe that he, somehow, was in the right place – and he was in the care of maybe the only person who could have helped. Several hours later at about 4:30 am Tom was finally able to meet Ben. He watched and talked with you Prof. Thome and saw that you watched over him. Thank you Prof. Thome for being there and for giving Ben the care that we couldn’t. Thank you for giving my son the life he is living.
As we got to know the unit, and the doctors and the nurses more, we slowly adapted to the reality of a critically ill baby. When I met Ben for the first time, Dr. Pulzer explained where we were up to. His honesty and frankness as he explained the situation to a tearful mum was just what I needed. I would like to thank him for giving me the detail, being honest and knowing I could handle it.
Later still I met Dr. Knüpfer. I will always carry with me the conversation we had at Ben’s bedside when he told me, ‘We can cry, yes, we can cry together, but not right here. Not with Ben. We need to focus on him and he needs to fight to get better and we need to be there with him, fighting.’ I would like to thank him for that conversation.
I also want to thank him for noticing, weeks later, that I was concerned about Ben’s progress, for giving me a revision lesson on the anatomy of the heart, and for teaching me how to look at an x-ray of the lungs. In other circumstances, I would like to say I enjoyed it. Again, it was just what I needed, when I needed it.
The day Ben was taken to the Heart Centre was the hardest of our lives. We could see the gravity of the situation written on your face Prof. Thome as you said ‘we need to talk’, but we were thankful for your honesty. We spent the hours we couldn’t be with him, as he made his journey, talking about what we looked forward to doing as a family when he came home. We also, briefly, acknowledged to each other that there was another possible outcome. When Dr. Knüpfer and Dr. Pulzer burst through the door to tell us he had made it, you could see how happy they were. Just thinking about it now makes me smile.
One of the first observations Tom made when Ben arrived back on the unit was how the nurses weren’t treating Ben like he was going to break, but that their hands conveyed their experience and confidence with handling such a fragile life, like watching a craftsman (or woman!) at work. Every movement considered, but having been practised so many times, executed with precision and grace. I could easily list at least 10 nurses by name and tell you why they mean so much to us. Maria, all the Stephs, both Tinas, but there are many more whose names I don’t recall now, sadly (although I will always remember their faces). Each of them helped us be close with Ben, helped us to work through what was happening and allowed us to feel an important part of the support he needed. Thank you each and every one of you who helped us and Ben, whether we met you or not.
Throughout the time Ben was in hospital, Tom and I had hours and hours of time to talk; by his bedside, in the car or while grabbing something to eat between visits. We probably talked more than we ever have done before. But we also had plenty of time to pause; either to just be with Ben in the moment, or to observe the doctors and nurses at work. This gave us space to process what was happening and to live the experience as it was evolving. It really helped. Being allowed to visit at any time point really made a difference to us.
Contrary to what you would expect, both Tom and I have said that the whole experience for us won’t be entirely remembered as a horrendous nightmare. We saw the best people, day in day out. Parents supporting one another, holding hands. Nurses who knew when something wasn’t quite right and somehow supported us without questioning, maintaining a level of intimacy and privacy in an almost impossible place to do so. The after-care team who were there to help with the smallest of worries. Doctors who were always on hand to answer questions – we always felt that almost as soon as we had a question, someone would suddenly be available at Ben’s bedside.
One of the things I am most thankful for as a parent of a child on your unit was the time that we were given. We never felt rushed when in conversation with the staff on the unit, not once. Not on the most critical days and not in his final week – and we asked a lot of questions! We never felt that we couldn’t stay a little longer. We never felt we were a nuisance, or an irritation. We always felt listened to. If we asked a question, we got an answer, and the truthfulness of those answers was helpful.
When I look at the care Ben received, I am in awe of the cost, the knowledge and the time he demanded. I am and always will be truly thankful that there are people who believe that these small humans are deserving of every penny, every person who is part of the unit and every minute of time they are given.
Thank you once again. We will carry you all in our hearts, always, and will always be thankful.
Bens’ mum & dad